pip?

[auntiesally]

sensory ataxia, osteparosis, anxiety, can i get pip? Any advice would be greatly welcomed from you, ataxia is not very well known and even a nurse asked me whats that?

[cymruralf]

yes you can but my most important piece of advice is get help from the CAB, speak to your neurologist and doctors before you start the process. The DWP do not make it easy for you in fact quite the opposite. Good luck

[auntiesally in reply to cymruralf]

thanks, since i have applied, my walking and balance has got worse, also medication changed, will they be interested in this, do i tell them?

[sheild]

It's got nothing to do with what you've got really but what you can do. The distance you can walk is really important, not how long it takes to go say 25 yards or how much you wobble or stop for breath.

Definitely seek support at the form filling and interview stages. You can get an idea of what you should get here benefitsandwork.co.uk/perso...

[SueMillman Partner Ataxia UK]

You can also get advice from the Ataxia UK Helpline which is open 10.30 - 2.30 Mon - Thurs on 0845 644 0606 or [e-mail]. How you explain and describe your ataxia will be fundamental to whether you are awarded PIP. Best wishes Sue

[Cuds]

Hi,

I have had a PIP assessment and found preparing for it first was worth its weight in gold - having heard some awful outcomes for other people. It is a very contentious issue as the companies who have been tasked by the Government to complete the assessments are keen to save money. Although it is called a "Personal Independence Payment" the assessors are not interested in how independent you are but, rather, the amount of help you may need due to "dependency" be that on people or equipment. The charity Mind have a link to the Citizens Advice Bureau with preparation sheets and explanations. The link is mind.org.uk/about-us/our-po... when you type this in click the link under PIP descriptors and it will take you to the page with all the forms and info to download.

You will be seen for assessment by a health professional but this could be a nurse, a physio, an OT or even a paramedic. They will complete an assessment with a specific format (for which they have had 4 weeks training). Sometimes they will only have had 20 minutes to try and find out about the condition the person they are seeing next has - so the rarer the condition the more likely they are not to know anything. They then send their report to a person who scores it and makes a decision - this person is NOT a clinician. Sometimes a clinician's assessment report of you is returned to them by the administrator to be changed, if they feel the assessor could suggest overcoming an obstacle with equipment - even if they have no evidence that such equipment exists.

For every activity you will assessed as satisfying a descriptor (which you will find in the paperwork outlined above). IMPORTANT - all activities must be able to be carried out: 'safely' (in a manner unlikely to cause harm to you or another either during or after completion of the activity); to "an acceptable standard"; "repeatedly" and "within a reasonable time period" (no more than twice as long as someone without a disability be that physical or cognitive. For judging reliability to carry out an activity, the assessor should look at your gait, your speed, your risk of falling and the effects that walking may have e.g. breathlessness, fatigue or pain - MAKE SURE YOU INCLUDE THESE IN YOUR FORMS.

Finally, make a copy of your completed form before you send it off - the assessor will refer to it during your assessment. Take your copy with you to the assessment for your use. If they ask a question about that section, read what you have written and then add anything. If you have said you have difficulty with reach, they will be observing you during assessment. If you use trick movements to control you movement - like fixing your elbows- then tell them how you manage that but explain how achieving that function might affect you later e.g. pain, spasm, fatigue etc.

After the assessment you will be sent an outcome letter with your scores. If you are unhappy with this you are entitled to ask for the report the assessor completed on the day - do this before you make any appeal. If you can take someone with you to the assessment then do - they can make notes of your responses to questions so you can compare this with the assessor's report if you are unhappy with the outcome.

Good luck!

[Mermaidia11]

That was really helpful, thank you for taking the time to post… As if it isn't hard enough

[Cuds in reply to Mermaidia11]

Your welcome - hope it helps!

[Mermaidia11]

it was very wise and timely advice, well thought out and informative, thank you

[KiwiBob]

I had PIPs for Ataxia. Just been turned down for its renewal. You won’t get it unless you go though an appeal. Even then they won’t know what it is. To get PIPS your condition only has to effect you 50% of the time.